Article by Gwen Jones, Department of Family Services
(Posted 2024 November)
In the United States, family caregiving is widespread but often unacknowledged. According to a 2020 report from AARP, an estimated 47.9 million U.S. adults served as caregivers for a family member or friend aged 18 or older. With the U.S. Census Bureau projecting the number of Americans ages 65 and older will increase from 58 million in 2022 to 82 million by 2050 (a 47% increase), and 65-and-older Americans’ share of the total population projected to rise from 17% to 23%, the demand for caregivers will only increase. The impacts of caregiving are wide-ranging, affecting individuals and families as well as society at large. Until a person is called upon to serve as a caregiver for a loved one, one may never understand how this role can impact their life and identity.
Today, Aaron Blight, Ed.D., is a well-respected author, educator, speaker and scholar on the topic of caregiving. In 2000, he was a young husband and father of three pursuing a career with the federal Medicaid program. His family’s life changed when his mother-in-law was diagnosed with a malignant brain tumor and she was given a prognosis of six to nine months to live. After undergoing surgery, she moved into Blight’s home and was cared for by the couple. Although she experienced a steady cognitive decline for the rest of her life, Blight’s mother-in-law surpassed her doctor’s predictions, living for five and a half years. The experience of caregiving was deeply impactful, changing the trajectory of the family as well as Blight’s career.
Following the death of his mother-in-law, Blight left the Medicaid program to open a company that provided caregiving services to families. “When I had my home care business, I started to really understand the universality of caregiving, but at the same time, how intensely personal it is. Family after family that I worked with in my home care business were all struggling with different disease conditions but very similar caregiving challenges,” he says.
While running his business, Blight also returned to school to get his doctoral degree. He researched caregiving, focusing on the psychosocial dimensions of care and how caregiving affects one’s view of themself in relation to others and the larger world. His research helped him better understand some of the challenges he experienced while caring for his mother-in-law. He incorporated what he learned in his work with family caregivers, sharing knowledge and resources to help them understand the impact of the caregiving experience.
In 2020, Blight wrote a book titled “When Caregiving Calls: Guidance as You Care for a Parent, Spouse, or Aging Relative,” to help others navigate their own caregiving journey. In the book he examines a variety of topics and situations common in caregiving and invites readers to reflect upon their own caregiving experiences, thoughts and feelings.
One metaphor that Blight often shared with family caregivers compared the journey of caring for a loved one to a theatrical production. In this metaphor, the star of the show is the person receiving the care while the caregiver always plays a supporting role. The script is written by the changing and emerging health conditions of the person receiving care. The twist is that nobody auditioned for this production, and they have no experience playing the role assigned to them. Expanding on this, Blight points out how caregivers may begin to resent their supporting role, wishing that their needs and wants could write the script. “Using that metaphor, I tried to explain to caregivers that once in a while it's okay for you to be the star of the show. Give yourself a little bit of love and attention and access some support because that's critically important for your own well-being,” says Blight.
Family Caregiver Identity Theory is another concept that Blight has found to resonate with family caregivers. Developed by gerontologists Dr. Rhonda Montgomery and Dr. Karl Kosloski, the theory explains how the expansion of caregiving duties may begin to eclipse the traditional family relationship between a family caregiver and the person they care for, creating an identity conflict. For example, an adult daughter may start out helping her father with small tasks such as paying bills and scheduling appointments. As her father’s needs increase over time and through no choice of her own, the daughter’s role gradually morphs to one of caregiver, rather than daughter. “The greater the gap between what you are doing and what you think you should be doing in the relationship, the more tension you're going to feel. That tension leads to an identity conflict in the relationship and within yourself,” explains Blight.
To resolve the crisis, Blight suggests, “People have to work through it and either resolve an identity discrepancy they are feeling, or they may need to cast off some of the caregiving tasks that are causing them the greatest tension by outsourcing those tasks to someone else.” For example, an adult son who is struggling with performing personal care tasks for his mother, such as bathing or bathroom assistance, may consider hiring a home health aide to assist his mother with these tasks.
As an older adult’s health declines, their caregiver may be tempted to take control of all aspects of the older adult’s life, especially if they believe it will keep their loved one safe. Blight cautions that this approach is harmful. “You can extend and promote their dignity by allowing them to make as many decisions as possible about their own life. Sometimes family caregivers take it upon themselves to come in and make decisions for their loved one when it's really not appropriate and it can be offensive,” he cautions. Blight also points out that as people age and they deal with mobility issues, they often develop compensatory approaches to tasks, saying, “They (caregivers) might assume that because Dad doesn't do something the same way that he used to, that he can't do that thing, and that's not true.” By taking over, the caregiver may inadvertently make their loved one more dependent on them unnecessarily.
In addition to their caregiving responsibilities, six in 10 caregivers also work and most have experienced at least one work-related impact, such as having to take time off. One group with the power to help relieve some of the burden of caregivers is employers. Blight shares that some companies have begun to recognize caregivers in their equity inclusion efforts as a group with unique needs. Employer support for caregivers can take the form of flexible schedules, remote work, and time off, either paid or unpaid. In some cases, employers offer caregiver support groups and workforce training, so employees and managers can better understand and support their colleagues who are caregivers.
In conversations around caregiving, the topic often turns to the downsides of caring for a loved one. It is important to remember that caregiving also yields many positives. Blight notes that caregivers report having a greater sense of purpose and meaning in life. Time spent caring for a loved one is also an opportunity to emotionally process the meaning of that relationship. “By its very definition, caregiving is giving care to another human being. It is inherently selfless. It's always about looking out for another human, and I think that is ennobling. It teaches us that we are interdependent as humans,” says Blight.
Resources for Family Caregivers
- Fairfax County Family Caregiver Support Programs, including caregiver education, caregiver supportive services, respite, and more: FairfaxCounty.gov/familyservices/older-adults/family-caregiver-support-programs
- ElderLink offers free classes, caregiver support programs, and case management services: FairfaxCounty.gov/familyservices/older-adults/elderlink
- Adult Day Health Care: FairfaxCounty.gov/neighborhood-community-services/adult-day-health-care
- Adult Day Health Care Support Groups for Caregivers: FairfaxCounty.gov/neighborhood-community-services/adult-day-health-care/caregivers
- “When Caregiving Calls: Guidance as You Care for a Parent, Spouse, or Aging Relative,” by Dr. Aaron Blight, is available from Fairfax County Public Library; call number: 362.6 Blight 2020: FairfaxCounty.gov/library
- Dr. Aaron Blight offers free resources for caregivers, including caregiving models: caregivingkinetics.com/downloadable-resources-for-caregivers
- Insight Memory Care Center provides care, support and education for people with Alzheimer’s disease and other memory impairments, their families and caregivers: insightmcc.org
- AARP Family Caregiving Resources: aarp.org/caregiving
This article is part of the Golden Gazette monthly newsletter which covers a variety of topics and community news concerning older adults and caregivers in Fairfax County. Are you new to the Golden Gazette? Don’t miss out on future newsletters! Subscribe to get the electronic or free printed version mailed to you. Have a suggestion for a topic? Share it in an email or call 703-324-GOLD (4653).